Disabled children: the father’s role

Inside the Portrait of a Family: the importance of fatherhood

The perception and role of fatherhood appeared to change dramatically during the last century, from father as Victorian patriarch to one who acknowledged the need to ‘get in touch with his feminine side’. However, official definitions, and therefore professional practice, rarely confirm the father in his nurturing role. The result is debilitating not only for the father, but the family of which he is a part. Legislation is needed to reinforce the changed role of fatherhood in the context of the modern family. Official documents and procedures should recognise changed expectations of family definition and professional practice, to enable professionals to support real families.

New life

‘The news that a child has, or is at risk from a developmental disability is often among the most frightening and confusing pieces of information that parents will ever receive.’ (Beckman and Beckman Boyes, 1993)

From the point at which families learn that their child has disabilities, what was to have been a limited parentƒ{professional relationship becomes lifelong. Professionals will become intimately involved with the family ƒ{ their guilt, their grief, their joy, as well as with pragmatic health, social and educational issues. Will these families be empowered or disenfranchised in these relationships? Will professionals be sensitive to their expertise, their strengths and their needs, or will these go unrecognised?

The dynamics of families are not always transparent. Individual families may not sit comfortably within the stereotyped responsibilities and roles designated by official forms and customary procedures. Limitations which are put on families when they most need the self-support of their own internal structures may impair their ability to meet challenges they will face. Insensitive professional and official intervention can generate conflict and weakness, instead of strength and mutual support. It is the responsibility of professionals to meet families at their point of need. To achieve this, they may need to review the way they are accustomed to work, and perhaps challenge the way in which their institutions function.

Any strategy that empowers families is to be applauded. For it is the family who will bear the main responsibility for the child with disabilities throughout their childhood, their transition into adulthood, and beyond. Professionals, by the very nature of their work, come and go; families do not ƒ{ they remain. Professional intervention should value each family member. In wanting to support and sustain the family as an interactive and holistic unit, it is important to appreciate the dynamics of the role and potential contribution of each family member. Mirfin-Veitch and Bray (1997) highlight the need to value grandparents, while other authors have identified the needs of siblings and their capacity for support to the child with disability (Meyer and Vadasy, 1997). This paper will consider the role of the father.

Redefining fatherhood

The classic stereotype of Victorian fatherhood is captured within the family photographic portraits of that era. The figure appears authoritarian, impervious and detached; the unbending backbone of the family ƒ{ imposing structure, but unconcerned with nurture. This image of the father was the nineteenth century legacy.

However, in the last century, fatherhood redefined itself. The strict patriarchal model, generated by Victorian Society, faded. By the end of the twentieth century, the acceptable father figure was ‘softer’, more liberal, and one who acknowledged the need to ‘get in touch with his feminine side’. Today’s media frequently publish photographs of fathers carrying their babies, pushing prams, playing with their children. The Times newspaper (Staples, 2000) recently reported Canadian research claiming that expectant fathers ride a parallel hormonal roller coaster to their pregnant partners, their testosterone levels falling as the pregnancy progresses. Previous celebrity tough guys – Johnny Depp, Arnold Schwarzenegger and Noel Gallagher of Oasis – unashamedly display their softer paternal image.

Patterns of fatherhood have varied throughout history. When men were weavers or farmers or craftsmen and worked at home, they were involved with their babies. Industry changed all that, sending them into factories and keeping them apart from their children. Now things are changing again as more men work from home, and have regular co-incidental contact with their children.

The traditional definition of fatherhood within the traditional definition of family is no longer totally helpful to modern families. In a relationship where the fathering figure is not necessarily married to his child’s mother, the commitment to a sustained and long-lasting relationship within which child-rearing is a joint venture, can be called into question. Some would say that this represents a lack of moral values, a failure to make a lasting, sustained commitment. Others could argue that families have reached a liberation point, no longer conforming to social norms that are constraining.

This concern about the identity of ‘the father’ is also affecting professional interactions with families. Territory in which the father has become welcomed ƒ{ for example, being present at the birth of his child ƒ{ is becoming once again uncertain ground and debated by leading gynaecologists, obstetricians and psychologists (Boseley, 2000a,b). An ongoing study at the University of London (Rogers, 2000) suggests that at least one in ten children was not sired by the man who believes he is their father. This misattributed fatherhood may if disclosed, according to the study, have consequences for the way children are treated and the amount of time, money and emotion invested in them.

Are these concerns justified? To discover whether or not this is so, it is necessary to look at the whole family – not from the outside, but from the family perspective ‘inside the portrait’. The outside official view, which relies on ‘definition’, interprets any deviation from the norm as a deficit, but from the inside, these deviations are often a family’s source of strength. Research indicates that despite anxieties about the destruction of the family, it is its ‘forms’ rather than its ‘functions’ that have changed (Dahlstrom 1989).

Fathers in context

In order to redefine fatherhood, we have to look at the definition of the family. The importance of the family should not be underestimated (Leskinen, 1994; Mittler, 1995). The UK government has recently set up the new National Family and Parenting Institute. The core message of this initiative is: ‘Families are at the heart of our Society and the basis of our future as a country.’ (Home Office, 1999)

However, the way in which professionals define ‘family’, and the roles within it, has great implications for its ability to function effectively. Families can offer a micro-culture (Carpenter, 1999) of traditions, values and opinions: a place where children can be nurtured, where love can be shared, where pain can be salved, where distress and disappointment can be offered calm and solace. However, as a recent study involving parents with a disabled child (Carpenter, 1997) illustrated, not all grandparents undertake emotional support; not all older siblings support child-care; not all fathers are the sole wage-earner; not all mothers cook family meals. The role of blood-related family members need to be valued and understood, but what emerged powerfully from this dialogue with families was the role of non-blood family members ƒ{ the ‘significant others’ who made a crucial contribution to the family group (Ardito et al., 1994; Carpenter and Carpenter, 1997). These significant others comprised neighbours, work colleagues, friends, church members and many others (Carpenter and Carpenter, 1997). They contributed practical, moral and emotional support.

Carpenter and Carpenter (1997) found that in practice families self-define their membership, their needs being met within a group of people far wider than any narrow official definition of ‘the family’. If official definitions include only blood relations, then they may exclude people who have a deep bond with the family and offer quality support in a variety of ways, both practical and emotional. Often the very documents used to register a child and its family for a service are not designed to elicit information about non-traditional family members. If professionals wish to gain information on which to base decisions for intervention from all quality sources, then they will need to reflect upon their professional practices. The ecology of the family is first and foremost the family’s domain. The role of the professionals is to meet them at their point of need. ‘Inclusion’ has to be the principle. Can professionals sustain inclusive practices when faced with a self-defined family?

Winton (1990) captures the essence of the family: ‘Families are big, small, extended, nuclear, multi-generational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks, as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire for mutual support. A family is a culture unto itself, with different values and unique ways of realising its dreams. Together, our families become the source of our rich cultural heritage and spiritual diversity. Our families create neighbourhoods, communities, states and nations.’ (p. 4)

In their work with real, not hypothetical, families, professionals need to keep the pattern of real family relationships in mind. Carpenter (1996) has suggested a model of an extended family support network (Figure 1) that reflects amore appropriate reality for many families than the traditional nuclear model. Patterns of interaction may vary within this group, and some may revolve around the triad of primary support: child, mother and father. They may also centre on a lone parent with a child with a disability, who seeks and receives various types of support from any of the identified groups. [insert figure 1]

Schalock (1996) has identified ‘quality of life’ dimensions and indicators which he considers crucial to a perception of well-being (see Table 1). Through sensitive enquiry based upon these dimensions, it will be possible to determine who a family’s significant support links are, and therefore those people whom professionals need to consider in their interactions with families. For example, the neighbour who cares for a child with disabilities after school hours until their parents return from work, will be able to give valuable support to parents in consultation with professionals. How many official forms or procedures recognise the value of such a link for a family and offer the possibility of their inclusion in discussions with professionals? [insert Table 1]

Fathers in the family

In families of children with disabilities, the nurturing role – and indeed the need for nurture – of the father often goes unrecognised by professionals. Fathers have been identified by researchers in this field as ‘hard to reach’ (McConkey, 1994), ‘the invisible parent’ (Ballard, 1994), ‘the peripheral parent’ (Herbert and Carpenter, 1994). In reviewing literature for their work with fathers of children with disabilities, Carpenter and Herbert (1997) became increasingly aware how little was known about the reactions of fathers to their situation, particularly in the very early days following the birth of their child (Hornby, 1991; Rodrigue et al., 1992). In contrast to mothers, fathers found it difficult to assert their involvement. Grief went unrecognised and unexpressed. Neither health and education professionals nor employers recognised the need of the father for inclusion in the family situation. Fathers were forced by professional structures and societal expectations to fall back on the nineteenth-century stereotyped role of protector, of being ‘competent in a crisis’ (Tolston, 1977), yet emotionally uninvolved.

What is it in the parentƒ{professional relationship that distances fathers so early? Why is it that services are failing to meet their needs adequately? By excluding them from the dialogue of care, services are failing to access a major resource for the family. They are doing this at a time when they are supposed to be more family orientated, or family-centred, in their practice. In excluding the father, they put a huge emphasis on the role of the mother; is this a fair burden when much of the information that a mother will receive about her child with a disability will be emotionally laden for both parents?

Fathers interviewed by Herbert and Carpenter (1994) felt there was a lack of co-ordination between services and that they were assigned a subsidiary role in the family, with services focussed predominantly on the mother and the medical needs of their baby. They were often stunned by the mishandling and insensitivity of professionals when ‘breaking the news’ to them, with no recognition of their emotional needs. As one father said: ‘They have guidelines for double glazing salesmen; why not for something like this?’ Many fathers felt that the choice of words at the time of disclosure of their child’s disability could have created a more positive image of their child: ‘I have examined your baby, and quite honestly I don’t like the look of her; she has all the characteristics of Down syndrome.’ There were pessimistic forecasts of the future from practitioners: ‘Your wife may attempt suicide or harm the baby’. A New Zealand study by Bray et al. (1995) was told by fathers that it had been difficult for them to accept that anything was wrong with their child, and that the accompanying intense emotions were made easier or harder depending on the quality of first contact with medical personnel.

Emotional reactions by fathers to the birth of their child with a disability varied (Rendall, 1997). Meyer (1995) tells how the birth brings about life-transforming experiences. For some, it is a challenge that allows them to display aspects of their personality not previously acknowledged. For others, it causes stress, disorientates their life goals and affects their work patterns. Nicholas Kappes, a father, writes in a collection of essays edited by Donald Meyer (1995): ‘Now unrelenting stress constantly sidetracks us, draining our time and energy.’ Another father expresses the grief-laden impact of his child’s birth and early childhood on his daily living in words of dislocation: ‘time freezes – then jerks forward’. Many fathers in the New Zealand study (Bray et al., 1995) spoke about their almost immediate worry about their child’s long-term future.

In UK studies (Herbert and Carpenter, 1994), fathers reported returning to work very soon after their child’s birth (as it would ‘keep some normality in our lives’), and working longer hours than usual. This, fathers acknowledged, caused them to withdraw emotionally from the home situation. As time went on many fathers noticed that their own social network shrank. Long standing friends did not always find it easy to accept a child with a disability into their home, particularly when the child exhibited challenging behaviour. The fathers said too that their partner relied on them for support, but this was not necessarily reciprocated. In the New Zealand studies, fathers reported that they consumed more alcohol and more frequently as a way of dealing with their own emotional trauma.

How can professional services help?

Studies with fathers provided interesting insights into their needs (Carpenter and Herbert, 1997). In discussions, fathers identified a need to be offered increased access to support, to be provided with opportunities to network with other fathers and to have their need for information and emotional support within the family addressed.

To include fathers, professionals need to take their life-patterns into account (McConkey, 1994), addressing issues such as access to professional services. The majority of support services work only during the day when many fathers are at work. It would be unrealistic to expect this to change radically. But is it impossible to think that one visit every six months by a health visitor, for example, might take place during the evening when the father is present? Or, indeed, that families are given as much notice as possible about appointments to enable the father to take time off work? In an ongoing Welsh study (Jones and Ware, 1995; 1997), a health professional articulates her strategy:

‘What I have tried to do in the past…is to involve the dads. I rarely meet the dads. There is one who is keen to talk to me, and I try to organise my visits to fit in with his shift work. A way of overcoming this problem for the others is to try to leave something with the parents, even just a sheet of paper, that they could talk about. I try to make clips of video that the parents could look at together and try to discuss their ideas.’ (p. 6)

Twenty special schools responding to a survey as part of the Involving Fathers project (Carpenter, 1995) admitted that the involvement of fathers could be increased by making more home visits at a time when fathers were available, and holding reviews in the evenings. It was universally felt that when fathers could be enabled or encouraged to attend, their contribution was invaluable.

Specific questions in the IF survey about current strategies for including fathers revealed that fathers responded well to involvement in specific tasks. This corresponds to findings from the New Zealand study (Bray et al., 1995) which identified ‘transforming love’ as a significant feature of fathers’ relationships with their child. The study defined ‘transforming love’ as love which expressed itself in transforming acts (e.g. converting a room in the house; building special play equipment in the garden) to enhance their child’s life opportunities. It also found that reasons for fathers not becoming involved included unrealistic expectations of their child’s ability and embarrassment about their child’s limitations.

If professionals recognised fathers’ strengths and needs, and addressed them with fathers through training and fathers’ workshops, their professional intervention would empower the father to become more active and supportive within his family. Through contact with each other, fathers would increase their informal network of support, thus giving them greater independence of transient professional services, while increasing their capacity for creative action in association with other fathers of children with disabilities.

Professionals should also recognise the value of the extended family and include them in their strategies. These extended families were found to be a major source of support to the fathers. It could be conjectured that the existing familiarity at an emotional level with other family members generated a climate of openness in which fathers could reveal their true feelings. One father commentator stated:

‘Is it the child that remains in each of us that causes us to turn to our own parents in times of despair? Certainly, the unquestioning support of members of our extended family helped greatly with establishing the valued place of our disabled child in our family. Their capacity for support is endless: is it duty? is it love? Whatever the reason, the emotional dialogue we have with our extended family has at times been our salvation.’

Fathers and the law

Roll (1991) states that in the European Union, mother, father, two siblings, in a married relationship is the norm for only one child in seven. Fathers need Society to adjust to family reality and support their nurturing parental role and rights through legislation. Employers should be encouraged to develop family-friendly policies that are equitable in giving child-care support arrangements to mothers and fathers. In the UK, the move to make granting of paternity leave an obligation of law is a welcome one. In the European Union, a new directive about to come into force across the member states will entitle both parents to 13 days additional leave in the first five years of their child’s life.

Looking ahead

What faces fatherhood in the new Millennium? A positive feature of paternity today is that men have permission to be involved fathers again as they did before the Industrial Revolution. However, this shift in attitude across Western cultures, welcome as it is, represents a small step away from a stance of parent inequality where mothers alone took the nurturing role. Each country’s particular ‘myth of manhood’ has trapped their men within a previously unquestioned set of expectations, both in their role as providers and as family members.

In spite of the shift in popular culture, official stereotyping is still a reality. The IF project (Carpenter, 1995) found that expectations implicit in official forms and documents, and in the structuring of services, excluded even foundational family members such as fathers. How much more do they exclude important members of the extended or self-defined family? In empowering fathers and other family members through inclusive practices, professionals can strengthen and empower the whole family network (Dempsey, 1993). In doing so, they decrease the risks of family breakdown and promote a better quality of life (Schalock 1996) for the child and their family members.

Fatherhood needs to be offered status and equality. As expectations of father-involvement in child-rearing change, Society must ask itself if there are adjustments it can make to support this intrinsically valuable redefinition. As Boseley (2000) states:

‘It is time that men started to challenge the assumptions in the workplace that the nurturing of children has nothing to do with them. Our children need their male role models as well as the female ones.’

References

Ardito, M., Damiani, M. and Freeman, S. (1994) Demographics of users of case management and their perception of natural support Paper presented at the American Association of Mental Retardation 118th Annual Meeting, Boston, Mass.

Hornby, G. (1991) Parental involvement
In D. Mitchell and R.I. Brown (eds)
Early intervention studies for young children with special needs. Norwich: Chapman Hall.

Jones, E. and Ware, J. (1995) Early intervention services in South Glamorgan. Paper to the British Institute of Learning Disabilities International Conference, Oxford, UK (September).

Jones, E. and Ware, J. (1997) Early intervention services to children with special needs: a Welsh study
In B. Carpenter (ed.) Families in Context: Emerging Trends in Family Support and Early Intervention. London: David Fulton.

Meyer, D. (1995) Uncommon Fathers: Reflections on Raising a Child with a Disability. Bethesda, MD: Woodbine House.
Meyer, D. and Vadasy, P. (1997) Meeting the unique concerns of brothers and sisters of children with special needs
In B. Carpenter (ed.) Families in Context: Emerging Trends in Family Support and Early Intervention. London: David Fulton.

Mirfin-Veitch, B. and Bray, A. (1997) Grandparents ƒ{ the supporting role In B. Carpenter (ed.) Families in Context: Emerging Trends in Family Support and Early Intervention. London: David Fulton.

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